Kiernan, his parents Shaun and Amanda, and siblings Lierin, Kellen, and Rory.
“ENJOY THE LITTLE THINGS IN LIFE BECAUSE, ONE DAY, YOU’LL LOOK BACK AND REALIZE THEY WERE THE BIG THINGS.”
– The O’Neal Family
KIERNAN O’NEALCurrent Age: 5 Home State: Tennessee Diagnosis Date: Aug. 6, 2020 Sanfilippo Type: MPS IIIB Parents: Shaun and Amanda Siblings: Lierin, Kellen, and Rory
What it felt like when we learned our child has Sanfilippo Syndrome…
Learning that Kiernan has Sanfilippo Syndrome was utterly devastating. A friend of ours had lost his son to Sanfilippo Type A just 1.5 months before Kiernan’s diagnosis, so we immediately understood the gravity. The pain was so overwhelming, it was as if we were already mourning his death.
What our child loves the most is …
Horses … anything farm-related, really, but mostly horses.
How has Sanfilippo affected our child?
Kiernan has global developmental delays. He also has the common tightening of the Achilles tendon, for which he is being fitted with AFOs. All other effects are mild thus far, such as some slight enlargement of his liver and skeletal changes that are only visible by X-ray.
Of course, he has the facial features that are so common among people with Sanfilippo Syndrome, but those only serve to make him more beautiful in our eyes.
How has Sanfilippo affected our entire family?
We have learned not to take each other for granted. It’s really driven home the fact that none of us is promised tomorrow.
The hardest part of being a Sanfilippo parent is …
Knowing what the future is likely to hold for our child, but being powerless to change it.
The biggest misconception people have about being a Sanfilippo parent is …
That we immediately know all the answers. This is a major learning process for us, and we rely, not only on what doctors can tell us, but also on the experience of the parents who have walked this road before us.
If we could tell people just one thing about Sanfilippo Syndrome, it would be …
That the people with the syndrome are not sick.
We get asked often if Kiernan is feeling better. He isn’t feeling sick, and, without a cure, he won’t get better.
If we could ask just one thing from the world/people, it would be …
To be kind to people with special needs.
Why are we asking you to donate to Cure Sanfilippo Foundation?
We are asking people to donate to find a cure so no other children will have to suffer through losing their abilities to walk, talk, eat, speak, etc. And so no other parents have to watch helplessly as their children go through this.
Our Latest News
Kiernan has completed all of the prerequisite testing, and we should find our soon if he qualifies for the IIIB gene therapy trial taking place at Nationwide Children’s Hospital. As of right now, he still seems very happy and healthy.